Discover data collection instruments and related materials in the Research Tools database. Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
31 - 40 of 46 Research Tools
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Gene Modification Therapy Scenarios for Parents of People with Down Syndrome
Year: 2018Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive interve
Research Population: Parents -
The Parental Personal Utility Scale (Parent PrU)
Year: 2024The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).
Research Population: Adults, ParentsValidation(s):Turbitt, E., Kohler, J. N., Brothers, K. B., Outram, S. M., Rini, C., Sahin-Hodoglugil, N., Leo, M. C., & Biesecker, B. B. (2024) The Parent PrU: A measure to assess personal utility of pediatric genomic results. Genetics in Medicine, 16(1), Article 100994.
Contact: [email protected] -
CSER Phase 2 Provider Return of Results Follow-up #1 Survey
Year: 2018CSER Phase 2 Provider Return of Results Follow-up #1 Survey is administered 0-6 weeks post-return of results to providers of research participants that were returned positive, negative, VUS, and se
Research Population: Physicians -
CSER Phase 2 Provider Return of Results Follow-up #2 Survey
Year: 2018CSER Phase 2 Provider Return of Results Follow-up #2 Survey is administered at 5-7 months post-return of results, regardless of whether the provider has completed the CSER Phase 2 Provider Return o
Research Population: Physicians -
CSER Phase 1: Physician Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This physician consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediat
Research Population: Physicians -
CSER Phase 1: Primary Care Physician Consent Form - The MedSeq™ Pilot Project: Integrating Whole Genome Sequencing into Clinical Medicine
Year: 2013The purpose of the MedSeq Project was to develop a process for a process for integrating information obtained from whole genome sequencing into clinical practice and to explore how physicians and t
Research Population: Physicians -
CSER Phase 1: Research Consent Form for Social and Behavioral Research - The Institutional and Professional Impact of Genomic Sequencing in Cancer Care
Year: 2013The Institutional and Professional Impact of Genomic Sequencing in Cancer Care examined the impact of the use of whole-exome sequencing (WES) on physicians and institutional systems at the Dana-Far
Research Population: Adults, Physicians -
CSER Phase 1: MedSeq Trials Published Study Protocol
Year: 2014This published study protocol for the MedSeq trials includes a description of the study design; recruitment, enrollment, and sample size plan; patient exclusion/inclusion criteria; and process of i
Research Population: Physicians, Adults -
CSER Phase 1: The Institutional and Professional Impact of Genomic Sequencing in Cancer Care Study Protocol
Year: 2014This document is the study protocol of the Institutional and Professional Impact of Genomic Sequencing in Cancer Care study.
Research Population: Physicians -
CSER Phase 1: Cardiologist Consent Form - The MedSeq™ Pilot Project: Integrating Whole Genome Sequencing into Clinical Medicine
Year: 2010The purpose of the MedSeq Project was to develop a process for a process for integrating information obtained from whole genome sequencing into clinical practice and to explore how physicians and t
Research Population: Physicians